Precision Medicine will need to get out of the pharma silo that is based on symptoms

Welcome to the digital era of biology (and to this modest blog I started in early 2005).To cure many diseases, like cancer or cystic fibrosis, we will need to target genes (mutations, for ex.), not organs! I am convinced that the future of replacement medicine (organ transplant) is genomics (the science of the human genome). In 10 years we will be replacing (modifying) genes; not organs!

This Blog has been created in order to enquire about brain-death and organ transplantation (organ removal and grafting) from both the scientific and ethical points of view. It shows scientific press articles (white papers), as well as interviews with physicians, nurses and medical ethics specialists, including specialists among the French transplant-medicine community. Both points of view (for and against organ removal from brain-dead patients) are being represented on this Blog, as both points of view do exist in the society of every country.

This Organ Transplantation-Blog is looking forward to helping people share their experience and opinion, and better (if need be) communicate with the international transplant-medicine community. Please feel free to tell your own story.

Thank you for sharing!

- Relatives of a brain-dead patient, having given their consent for organ removal, and relatives of a brain-dead patient who refused organ donation:Read more:click here.Please tell us about your hard-won knowledge of the death called “brain death”, or “invisible death”, as well as “imminent death” by the transplant-medicine community (physicians, neurosurgeons). How did you react in front of your brain-dead relative? Did your intellectual understanding of brain-death match your emotional reaction (feelings, emotion, body), or have you experienced a conflict between the scientific reality and the emotional / spiritual reality?

How have you and your distraught family been able to go through the process from the grievous loss of your relative to organ donation consent, or refusal to consent to organ donation?

Did you experience a conflict between that strong feeling you had about having to do your best to accompany the dying one (help smoothing the dying process, make sure the dying one will feel as comfortable as possible) and the will to donate his organs (relief that some good could arise or has arisen from what could have been merely a senseless tragedy)?

Which help did you get from the transplant-medicine community and other people? In case it’s been a while since the organ removal on your brain-dead relative occurred, did the hospital (clinic…) keep in touch with you and make some kind of follow-up, in order to provide you with some moral and psychological support on a regular basis, or do you have the feeling you have been kind of left behind, and you could use some help, even now? Could you please describe the support you got from the hospital (clinic)? Did it help?

In case you refused the removal of your brain-dead relative’s organs, could you please tell us about your hard-won experience regarding how to resist the pressure the entire society and transplant-medicine community usually puts on the brain-dead donor family (even if some of them will deny it) in order to get the family’s consent? No doubt your experience will be of great help!

As a young brain-dead patient’s mother puts it: “I doubt everyone expressing opinions about organ donation consent, or refusal to consent to organ donation in case of brain-death has found himself/herself in the situation of having to make a choice for real!. ” This young brain-dead patient’s mother feels very isolated, as brain death only represents 1% of global death causes!

Read the excellent article: "What Kind of Place is an Intensive Care Unit? Brain Dead Person From the Viewpoint of Life Studies", by Masahiro Morioka (1989).==> click here.

- “Live” Donor: You have received an organ (kidney, lobe of liver, or lung) thanks to a living donor (husband, wife, boyfriend, girlfriend, brother, sister, close relative like aunt or nephew…). How did you go through this hard time, yourself and your living organ donor? How did you both recover from the surgery? Who helped you make the “right” decision?

- “Live” Donor operated on with minimally invasive surgery (robotic surgery): as you may be aware, kidney removal procedures with the help of minimally invasive surgery (keyhole surgery, also called robotic surgery) are being currently performed and belong to the state-of-the-art surgical techniques, enabling the patient to be left with small incisions only, instead of some large scars, and in the post-operative time feel less pain, recover more quickly. To read more about it, click here (language: English and French).

If you have had surgery or are planning on having surgery with the minimally invasive surgical techniques,==> please tell us your story!

- You need organ transplantation and you are currently waiting for the opportunity to get a new organ (kidney, heart, lung, cornea, liver, etc.).==> Please tell us about it!

Contact info:

Catherine Costecath.coste@laposte.net

==> TESTIMONY : "MY LITTLE CORNER OF THE WORLD":A brain-dead young boy's mother, who has agreed on organ donation, has created a forum about organ donation and brain death:

"Amid stories of people destined to die unless they get an organ transplant, we are told that we can help give these people a second chance at life by signing an organ donor card or its equivalent. That way, if anything ever happens to us and doctors are unable to save our life, they will have the option of using our organs to save someone else's life.

This is, as I say, what we are told. And those who do the telling always make it sound as if there is no downside--and I believed them, and so did my husband. For many years, we both answered the call and carried the special organ donor icon on our driver's licenses--but we don't anymore, and I created this forum as a place to tell my story about what changed our minds.

I will also be using this forum as a place to store and share information I've accumulated about brain death and organ donation and other related topics."

Access this Forum through the Transplantation Ethics International News Blog:==> click here.

"Here is what I think. I think that deep down, the people who have created this organ distribution network also feel the irreplaceability of brain dead people. At the same time as they believe that we should replace an organ of a human being while we can, otherwise it would be a waste, they are also aware of the fact that this organ was once part of a brain dead person, and is therefore irreplaceable and cannot be exchanged for something supposedly having the same value. If we start to pay sums of money equal to the value of the transplant, and consequently exchange irreplaceable organs for a supposedly equal cash value, then we ourselves destroy their irreplaceability. But if we offer them out of goodwill, then this does not happen. This is because it is not an exchange for something of equal value, but a unilateral gift of 'irreplaceability.'

I don’t know if transplant doctors will read this and think, 'that’s just how it is,' or instead think, 'we are scientists, and have nothing to do with this kind of romanticism.' But how they respond is not important. What is important is that even at the forefront of modern medicine, charging onward in the pursuit of efficiency, we make sure that we can feel as if a strong and deep-rooted focus on 'irreplaceability' remains. One key to solving the ethical problems of modern medicine is hidden in this area. And it will also be a key to understanding the character of the medicine and science of the future."

==> Here is an e-mail exchange I had on Sunday, October 23th with Maurice Bernstein, M.D. , Associate Clinical Professor of Medicine, Keck School of Medicine, University of Southern California:

Catherine Coste:I'm trying to investigate about brain-dead donor ethics. At present, French transplant-medicine community claims that it is just out of the question to mention that brain death could be a questionable concept, especially when being asked by somebody from the public (closed-door medicine syndrom still striking in France, Doctors are suffering from it!). Almost each and every French transplantation specialist claims that a brain-dead donor is dead since brain death is death. There are just no other alternatives in their opinion. They justify their statement by referring to the August 2004 Amendment of the French Law of Bioethics. This Amendment is re-defining death as brain death. That is: the definition of death no longer includes the arrest of cardio-pulmonary functions: as of August 2004, brain death suffices. Brain death = death.

I am currently developing a Blog in order to show that the whole transplantation problematic involves issues, updates, controversies (especially about the dead donor rule) that are a great deal more complex than just the few explanations the non-specialist broad public is being (reluctantly?) provided with by the French transplant-medicine community...

I have asked French transplant-medicine specialists about the "dead donor rule": how's that, given the fact that this dead donor rule is being plagued with severe inconsistencies, this rule still justifies organ removal from brain-dead people? Shouldn't the dead donor rule be questioned again, and transplant specialists come up with another concept, fully acceptable this time? I am still waiting for the answer...

Dr. Maurice Bernstein:"It is understandable why there is resistance to the acceptance that death by neurologic criteria (also known as "brain death" ) really equals death. It is hard to accept a warm body with a heartbeat but with breathing by ventilator is really dead. And despite the fact that death of all the cells of the body are not occuring at one defined moment and are continuing to function for a variable period of time especially if the heart beat is maintained, blood pressure maintained and respiration is produced by the ventilator, there is no return to life, never. When the respirator is turned off, the absence of any breathing continues and the heart in a few minutes. If the respirator is continued, the heart and blood pressure may fail in a matter of hours or a day or so and occasionally longer despite continued attempts at support of these functions but there will be no recovery of respiration or awareness or spontaneuous motor activity, never. The brain function is gone. The declaration of death at a certain time based on criteria of death by neurologic criteria is as as arbitrary as the usual classic declaration of death by absent cardio-respiratory function. But if the criteria are strictly met, there is no return to life.

There is much, nevertheless, to discuss about death by neurologic criteria and subsequent organ donation and organ reception for those who are still alive and personally aware of the events occuring.

So I am pleased that your blog is around for those who want to ventilate to do so. Emotional ventilation by those affected is important.. so try not to pull the plug on your blog respirator..."

"A 17 year old girl died after she was suffocated by the crowd at a rock concert. There were 2 other deaths, but this one survived to reach the hospital, and died only two days later. Her parents were approached for organ donation, and the question I ask, is how do you describe the situation to the family.

The two alternatives we argued about are:

Do you state that the patient is dead, and that organs are maintained artificailly pending their decision, making it clear that this support will stop if they decide not to donate?

Do you state that the patient is brain dead, proceed to explain the meaning of brain death? with/without reference to stopping support.?

Is there a third way that we didnot consider?Arguments for the former approach were that the message of death is unambiguous, to the latter, is that the family cannot believe a direct statement of death, seeing their beloved all rosy, with a regular heart rate on the monitor. Obviously, a humanistic and compassionate approach is essential, and applies equally to both attitudes."

"Brain death, the colloquial term for the determination of human death by showing the irreversible cessation of the clinical functions of the brain, has been practiced since the 1960s and is growing in acceptance throughout the world. Of the three concepts of brain death - the whole-brain formulation, the brain stem formulation, and the higher brain formulation - the whole-brain formulation is accepted and practiced most widely. There is a rigorous conceptual basis for regarding whole-brain death as human death based on the biophilosophical concept of the loss of the organism as a whole. The diagnosis of brain death is primarily a clinical determination but laboratory tests showing the cessation of intracranial blood flow can be used to confirm the clinical diagnosis in cases in which the clinical tests cannot be fully performed or correctly interpreted. Because of evidence that some physicians fail to perform or record brain death tests properly, it is desirable to require a confirmatory test when inadequately experienced physicians conduct brain death determinations. The world's principal religions accept brain death with a few exceptions. Several scholars continue to reject brain death on conceptual grounds and urge that human death determination be based on the irreversible cessation of circulation. But despite the force of their arguments they have neither persuaded any jurisdictions to abandon brain death statutes nor convinced medical groups to change clinical practice guidelines. Other scholars who, on more pragmatic grounds, have called for the abandonment of brain death as an anachronism or an unnecessary prerequisite for multi-organ procurement, similarly have not convinced public policy makers to withdraw the dead-donor rule. Despite a few residual areas of controversy, brain death is a durable concept that has been accepted well and has formed the basis of successful public policy in diverse societies throughout the world".Source:PubMed

"Research by Siminoff and colleagues reveals that many lay people in Ohio classify legally living persons in irreversible coma or persistent vegetative state (PVS) as dead that additional respondents, although classifying such patients as living, would be willing to procure organs from them. This paper analyzes possible implications of these findings for public policy. A majority would procure organs from those in irreversible coma or in PVS. Two strategies for legitimizing such procurement are suggested. One strategy would be to make exceptions to the dead donor rule permitting procurement from those in PVS or at least those who are in irreversible coma while continuing to classify them as living. Another strategy would be to further amend the definition of death to classify one or both groups as deceased, thus permitting procurement without violation of the dead donor rule. Permitting exceptions to the dead donor rule would require substantial changes in law--such as authorizing procuring surgeons to end the lives of patients by means of organ procurement--and would weaken societal prohibitions on killing. The paper suggests that it would be easier and less controversial to further amend the definition of death to classify those in irreversible coma and PVS as dead. Incorporation of a conscience clause to permit those whose religious or philosophical convictions support whole-brain or cardiac-based death pronouncement would avoid violating their beliefs while causing no more than minimal social problems. The paper questions whether those who would support an exception to the dead donor rule in these cases and those who would support a further amendment to the definition of death could reach agreement to adopt a public policy permitting organ procurement of those in irreversible coma or PVS when proper consent is obtained."

==> Liver Unit Suffered in Silence: "UCI's small transplant center was paralyzed by fear of failure, but its director discouraged dissent and struggled to maintain its image."(Article by Alan Zarembo, L.A. Times Staff Writer).

==> Testimonies posted on the International News Blog(English and French): click here.

Who are you?

In March 2005, I've initiated a blog about bioethics. Organ replacement technologies and genomics are part of today's sustainable health economics. This is not medicine under ideological pressure ! ...